CE Handbook - Chapter 6: Research Priority Setting and Integrated Knowledge Translation (Focus Area 3)
For a variety of reasons, the involvement of citizens in research priority setting and in participatory research methods is growing both in Canada and abroad. A recent technical report published by the RAND Corporation outlines and analyzes the growing trend of participatory and community-based research in Canada, Australia, the Netherlands, the United Kingdom, and the United States25. According to the report, this spike in the use of participatory research methods has a wide range of causes: everything from improvements in public education levels, increased accessibility of information, and philosophical demands for the democratization of research have fostered a desire from the public to be engaged in the research process and the analysis of its results.
CIHR has a large part to play in facilitating the relationships between citizens and the academic community. This Focus Area from the CE Framework emphasizes the importance of supporting opportunities to foster and maintain relationships between citizens and CIHR's funded researchers. The development of these relationships is mutually beneficial because citizens' input can be used to comment on the relevance of proposed research, to identify research gaps, and to inform research priorities, while the experience of being part of the research process can empower communities and can increase scientific literacy.
This chapter focuses on both the CIHR funding streams that encourage CE in research methods and some key considerations to keep in mind when citizens are engaged to establish specific research priorities for CIHR's Institutes or branches.
6.1 Funding Tools and Programs Supported by CIHR
Practical arguments for participatory research are documented; however, some resistance to the "added effort" of including citizens or community members in the research cycle exists in academia. The RAND report addresses the widely held belief within the research community that lay participation actually decreases the quality of the research conducted. The arguments from researchers are straightforward: citizens (or lay participants) simply do not understand the complexities of the research process or the theories underlying the issues and, therefore, are not able to contribute meaningfully to the project. According to the report, however, there is little evidence to support this viewpoint—and negative effects of lay participation can actually "be offset by improving the quality of training for both researchers and lay participants."26 Furthermore, a health sciences specialist with the National Institutes of Health in the United States argues that the role of scientists is "to build and retain trust so that people can understand and enroll in clinical trials involving the community in the research process helps build that kind of trust."27 That "kind of trust," of course, can extend beyond the world of clinical trials and can lead to consistent support for health research in all its forms.
As the federal agency for funding health research in Canada, CIHR's role in this aspect of CE is clear: we need to develop more funding opportunities that encourage (or require) our researchers to engage citizens and/or community members in their work. A number of funding tools that focus on partnerships between researchers and knowledge-users28 has already been developed at CIHR. These include Meetings, Planning and Dissemination grants, Knowledge to Action grants, and Knowledge Synthesis grants. CIHR's Operating Grants program also includes provisions for researcher-knowledge-user partnerships and targeted knowledge translation projects. In addition, entire programs have been built on integrated knowledge translation and participatory or community-based research principles, including Partnerships for Health System Improvement (PHSI) and the HIV/AIDS Community-Based Research Program.
A number of CIHR's Institutes have already embraced the use of integrated knowledge translation and participatory or community-based research funding. To build on this focus area of the CE Framework, CIHR Institutes, branches, and strategic initiatives are encouraged to incorporate integrated knowledge translation and participatory and/or community-based research methodologies (described below) into the development of new funding opportunities.
Integrated Knowledge Translation
Integrated knowledge translation29 (iKT) requires a collaborative and participatory approach to research that is action-oriented and focused on solutions and impact. IKT is most appropriate within the framework of problem-based, as opposed to curiosity-driven, research. In fact, the impetus for the study may originate from a knowledge-user who has identified a problem or need for action and approached academic partners for ideas about how it could be addressed.
In IKT, the contributions of the researchers and the knowledge-users are equally valued: the knowledge-users bring different knowledge, skills, and insights to the research team; have a unique understanding of the results (which may be different than the researchers); and are well-positioned to move these results into practice. Researchers have a refined and specific skill set for conducting research and accessing grants; they also possess their own network of contacts. Equally, knowledge-users possess an expertise derived from being members of their organizations, communities, or professional fields, and have much to contribute throughout the research. It is very important to recognize and respect all different forms of expertise. The strength of the overall team results from the combined voices and varied knowledge, experiences, and viewpoints of everyone around the table.
Figure 7: The Integrated Knowledge Translation Research Cycle
Figure 7 (above) outlines the potential stages in the iKT research cycle that may provide an opportunity to engage citizens and/or knowledge-users. From CIHR's perspective, iKT must involve collaboration between the knowledge-users and researchers (knowledge creators) to:
- shape the research questions (step 1);
- interpret the study findings (and craft messaging around them) (step 4); and
- move the research results into practice (step 5).
In addition to these criteria, knowledge-users and researchers can also work together to:
- decide on a methodology;
- help with data collection and tools development; and
- help with widespread dissemination and application.
In CIHR's view, these additional criteria are supported and encouraged, but are not mandatory because they may not be appropriate or applicable in every situation. (For more information or advice about how to incorporate iKT requirements into your Institute or branch's funding opportunities, please contact the Knowledge Synthesis & Exchange Branch at firstname.lastname@example.org.)
In keeping with the philosophy of better integrating the research and knowledge-user communities, "merit review"30 is used to assess applications to iKT funding opportunities at CIHR — in addition to regular peer review. This way of doing research requires that both the scientific merit and potential impact of the projects be assessed using separate scores. In general, the potential impact score reflects the relevance/importance of the project to the knowledge-users and the likelihood that the project will have a substantive and sustainable impact on health outcomes, practice, programs and/or policy in the study context. The scientific merit score generally reflects the rigour and appropriateness of the proposed research methodology and the strength of the research team. Each application is reviewed by at least one researcher and at least one knowledge-user, who both assess potential impact and scientific merit; successful applications must receive high scores in both merit review and scientific review categories.
Researchers familiar with participatory research will recognize its overlap with integrated knowledge translation. Participatory research is a research approach that uses a partnership between researchers and those impacted by envisioned results to educate, take action, or build capacity to address current and future issues. Participatory research, in its fullest expression, involves researchers and knowledge-users as a team for decision making throughout the process; however, there are different schools of thought behind participatory research, and the minimum requirements to meet participatory research standards are generally agreed to be equal to or greater than the minimum standards that CIHR has for integrated knowledge translation.
Community-based research is similar to participatory research and integrated knowledge translation, but the principal study is focused within a given defined community. Community-based research encompasses a spectrum of research that actively engages community members or groups to various degrees, ranging from community participation to community initiation and control of research. From a university perspective, community-based research refers to a wide variety of practices and is supported by several academic traditions; it is now embraced in a range of disciplines including geography, education, social work, nursing, medicine, and engineering. Many universities are developing programs that are particularly supportive of community-based research.31
The case study examined in this chapter focuses on CIHR's flagship community-based research program, the HIV/AIDS Research Program. By engaging a range of people and perspectives— including academic researchers, local researchers, community members, and community partners—a level of shared ownership of the research process and products emerges.
While there may be some residual resistance within the research community about the appropriateness of including citizens and/or community members in the research process, a number of successful funding opportunities for integrated knowledge translation, participatory research, or community-based research have already established a solid foundation for this focus area at CIHR (see, for example, the opportunities launched by III, IAPH, IPPH, and IGH noted in Appendix 1 of the CE Framework). The potential to build on this foundation is incredibly strong, as facilitating and strengthening partnerships between researchers and knowledge-users is specifically noted as a key component of CIHR's new strategic plan.
To help educate the research community about the benefits of including knowledge-users in the research process, CIHR recently developed a series of tutorials on knowledge translation, which are available online. One of these is the Guide to Researcher and Knowledge-User Collaboration in Health Research (referenced above). This learning module leads those engaged in collaborative health research—both researchers and knowledge-users—through many of the key issues that should be considered and addressed when an integrated approach is taken to create knowledge and translate it into action. These modules are highly recommended for both CIHR staff and researchers.
6.2 Research Priority Setting and Citizen Engagement
CE approaches in research priority setting are often used to consider complex issues and difficult choices to ensure that the research is relevant to the needs of Canadians—and, ideally, to improve the translation of research into practice. The internal scan of CE activities that was conducted as part of the development of the CE Framework revealed that CIHR already has a history of encouraging discussion and dialogue to establish research priorities. The distinction between "strategic planning" (discussed in Chapter 5) and "research priority setting" (discussed here) is that, for our purposes, the latter has a more tailored focus. For example, an institute may use the Decision Tree Model to develop a strategic plan. Most likely, that strategic plan will cover a variety of research areas (mobility, dental health, and bone health), but the specific sub-topics (osteoporosis in women after menopause) may not be decided.
A variety of approaches exist to include citizens in the establishment of these research priorities. CIHR's internal CE scan highlighted the CE approaches that the Institutes and Branches have used in this focus area (see Tables 1 and 2 in Appendix 1 of the CE Framework). For example, facilitated priority-setting workshops have been used to encourage participants to engage in an inclusive patient-centred discussion, to go beyond personal views and agendas, and to ensure that everyone is as clear and concise as possible in stating priorities. These approaches demonstrate that CIHR already has a foundation in the use of CE methods that encourage discussion, dialogue, and ongoing collaboration. Moving forward, CIHR may be able to explore other deliberative dialogue methods, including round tables, consensus conferences, study circles, deliberative polls, online moderated dialogues, and forums or workshops.
To establish specific sub-topics, CIHR staff members are encouraged to use the Decision Tree Model introduced in Chapter 2 and the planning advice provided in Chapter 3 (also see Chapter 5 for an example of how these tools can be used). Preferably, the use of CE in research priority setting will not only lead to the identification of research sub-topics, but will also lead to discussions (or decisions) about the type of funding opportunity that will be developed to support those priorities. Ideally, that funding opportunity will also be grounded in integrated knowledge translation, participatory research, or community-based research for its eligibility requirements (i.e., applicants will be required to explain how they will engage citizens or knowledge-users in their research approach).
As part of the research priority-setting process, it is important not only to follow the steps in Chapters 2 and 3 to develop your CE plan, but also to ensure that lay participants are provided with the following:
- adequate background material about CIHR's funding "tools"—what they are, how they work, and what the timelines are like (from Request for Application development to funding start dates);
- information about integrated knowledge translation, participatory research, or community-based research methodology, the ethical guidelines that are in place for researchers to follow, and CIHR's eligibility requirements; and
- documentation about how the research area was chosen.
The Partnerships and Citizen Engagement (PCE) Branch is also available for advice and more information as you develop your research priority-setting CE plan (email@example.com).
Case Study 3: The CIHR HIV/AIDS Community-Based Research (CBR) Program
Case Study #3
What: The inclusion of community members in CIHR's HIV/AIDS Community-Based Research Program
Why: Including the perspectives and experiences of stakeholders ensures that the research conducted is relevant to the community. Community members are also empowered by actively participating in the research and implementation of results.
Who: Communities affected by and involved in the fight against HIV/AIDS.
How: The direction of the Program is guided by a Steering Committee that has equal representation of researchers and individuals from community organizations. The Program itself funds community-based research, which (by definition) includes affected individuals in research projects, communication, and implementation. Furthermore, the merit review committees for research applications also have equal representation from researchers and individuals who are based in community organizations—and both types of members have equal voting power.
The CIHR HIV/AIDS Community-Based Research (CBR) Program supports knowledge development and capacity-building initiatives of relevance to communities engaged in the fight against HIV/AIDS. Community-based research involves community members in all stages of the research process—from the very beginning to define the research question. This ensures relevance to the community, capacity-building, and integration of community members in conducting the research; it also promotes active participation in the development and implementation of the dissemination strategy. In addition to these principles, community-based research maintains the same level of methodological rigour and ethical review as other research approaches.
The program has emphasized capacity-building for research within community service organizations by linking them with new research students, funding capacity-building workshops, funding community-based research facilitators who work with organizations in their region to develop research capacity through training, and establishing contact with research collaborators in academia and government. Operating and Catalyst Grant funding is also available for research projects.
The program receives guidance from the CIHR HIV/AIDS Community-Based Research Steering Committee, which was established in 2006 as a sub-committee of the CIHR HIV/AIDS Research Advisory Committee (CHARAC). The CBR Steering Committee, which has equal representation of researchers and individuals from community organizations servicing affected populations, provides advice to CIHR on future funding opportunities, as well as the creation of internal policies supporting the needs of the program.
Membership on the committee starts with a minimum two-year term with replacement members identified through a call for nomination process. Upon acceptance of a position, new members are sent an information package containing details about the HIV/AIDS Community-Based Research Program as well as the CIHR Conflict of Interest Policy. Departing and incoming members overlap for one meeting to ensure continuity and a smooth transition process.
The involvement of citizens in the HIV/AIDS Community-Based Research Program is demonstrated in the merit review of research proposals; like the steering committee, review committees have equal representation of researchers and individuals from community organizations. Both types of members have equal voting power, with one of each assigned as a reviewer to every funding application being evaluated. This program demonstrates the principles of community engagement in research: "Community engagement can be difficult to define clearly, but at its heart, it is the intersection of the complementary efforts of members of the lay community, health practitioners and medical and public health researchers to improve health."32
In 2009, CIHR contracted PRI Inc to evaluate the HIV/AIDS CBR Program. The purpose of the evaluation is to assess the program rationale, the effectiveness of its design and delivery processes, and its successes. CIHR will use the evaluation results to strengthen the HIV/AIDS CBR Program and maximize its impact on Canada's response to the HIV/AIDS epidemic.
Engaging citizens in research priority setting and developing programs to promote integrated knowledge translation, participatory research, and community-based research is not foreign to CIHR. Moving forward, we can build on the foundation that already exists in this focus area. These approaches facilitate opportunities to create CIHR-to-participant relationships and participant-to-participant relationships through consultations that reach a broad base of stakeholders (including knowledge-users, health practitioners, health institution administrators, public policy decision-makers, front-line educators, the media, health charities, persons living with diseases/conditions, consumers, family members and caregivers, the private sector, and the general public). The expectation or hope is for everyone to look beyond their own area of interest and focus on the greater research agenda.
- Sharif Ismail, Participatory Health Research: International Observatory on Health Research Systems, The RAND Corporation (2009). Emphasis added.
- Interview with Rona Siskind, quoted in C. Lukensmeyer and L. Hasselblad Torres, Public Deliberation: A Manager's Guide to Citizen Engagement, IBM Center for The Business of Government (February 2006).
- Knowledge-users are all those who might use, benefit from, or otherwise be impacted by the results of research, but are not necessarily involved in their production. Also referred to in the literature as end-users and, in many cases, co-applicants.
- Many of the terms and definitions included in this section are derived from CIHR's online knowledge translation learning modules. For more information, turn to the Guide to Researcher and Knowledge-User Collaboration in Health Research, CIHR online Knowledge Translation Learning Modules, developed for CIHR by Participatory Research at McGill (PRAM), David Parry, Jon Salsberg, and Ann C. Macaulay (2009).
- Merit review is the evaluation, conducted by a committee of researchers and knowledge-users, that assesses both the scientific merit and potential impact of research projects that engage knowledge-users.
- The Funding and Development of Community University Research Partnerships in Canada: Evidence-Based Investment in Knowledge, Engaged Scholarship, Innovation and Action for Canada's Future, Office of Community-Based Research, University of Victoria (May 2009).
- Researchers and Their Communities: The Challenge of Meaningful Community Engagement. Prepared by: The Clinical and Translational Science Award (CTSA) Consortium's Community Engagement Key Function Committee and the CTSA Community Engagement Workshop Planning Committee.(2009).